Sunday, December 15, 2013
Dear Ms. McIlwain:
We are writing to extend our appreciation for your recent Op-Ed piece in the New York Times, “The Day My Son Went Missing” (NYTimes.com, November 12, 2013), and commend you for not only raising awareness about the critical issue of wandering for individuals with autism and their various caregivers, but also for sharing your own personal experiences.
In your piece, you highlighted the search for Avonte Oquendo, a 14-year-old boy from Queens with autism, who to date has not been found. Thank you for also mentioning the two other children who went missing during that time, only one of whom was found safely. Since your story was published, yet another young man with autism, Michael Karwan, from Marlboro, NJ also went missing. Luckily, he was found safe in Cleveland, OH within a week. Yet, perhaps it has been the ongoing search for Avonte Oquendo that has helped to shed a greater light on the very serious issue of “wandering,” “bolting” or “elopement” among individuals with autism.
As with any missing child case, there is great concern and worry amongst the community; however, a unique set of concerns presents itself when the missing child (or individual) is diagnosed with an autism spectrum disorder (ASD), due to the often significant social, language/communication and behavioral deficits that are present in this population. These deficits can present additional safety risks, as individuals with autism are often unable to maintain their own safety, ask for assistance or answer general information questions (e.g., name, phone number, address) which may make their recovery more challenging.
It was helpful that you included the results of a recent study published in the journal Pediatrics, which found that 49% of children with autism had at least one attempted elopement after age 4 as reported by their caregivers. As you eloquently state, this study taken together with the current estimates on prevalence of autism in the United States (ranging from 1 in 50 to 1 in 88), translates into tens of thousands of parents who share a very serious concern about their child with autism wandering. These parents have good reason for concern, as sadly, since 2011, 41 American children with autism have died after straying from their caregivers.
What many of your readers and our readers may not have known is that there is a limited amount of guidance, training and resources available to help in situations where an individual with autism strays from their caregiver; you did an excellent job illuminating those points within your article. The first of which is that the Department of Education offers no protocol and there is no mandate in place to notify parents of elopement (or attempts). Secondly, the Amber Alert system can only be used in cases of potential abduction and thus cases of elopement do not qualify. Finally, while the Department of Justice offers $1 million a year in funding for first-responder training on wandering and tracking technology for Alzheimer’s, no equivalent funding exists for this behavior in autism. That must change.
We appreciate your honesty and bravery in sharing your own family’s story with wandering, and are pleased to hear that you have identified resources to keep him safe. To that end, we also greatly appreciate your work as an advocate at the National Autism Association and thank you for sharing information and resources for caregivers regarding this dangerous behavior.
Teaching parents, caregivers, educators and first responders about autism and the complexities involved in interacting with individuals who have social and communication delays is not only an incredibly worthwhile effort, but in the case of wandering, may be life-saving. As you mention, budgets are certainly tight, “but here is our choice: We can spend the money now on awareness and training, or later, on huge, intensive searches for missing children.”
After reviewing the Big Red Safety Toolkit, which you linked in your article, we at the Association for Science in Autism Treatment would like to thank you and your colleagues for the development of such a comprehensive and accessible resource. We highly recommend it for the families and educators of individuals with autism. This resource clearly outlines a host of useful tools and resources (e.g., Caregiver Checklist, Family Wandering Emergency Plan, First-responder profile form, Sample IEP Letter or General Awareness Letter).
As you pointed out, elopement can have tragic consequences and while these outcomes are preventable, heightened sensitivity, increased education and more accessible resources are needed. Continued initiatives to improve awareness among the community, educators and first responders would likely reduce wandering behavior and related deaths in the autism population. We hope data about the effectiveness of current and future initiatives will be available --this will allow us to continue to evaluate the existing tools and training so that we can prevent these tragic losses. We applaud you for succinctly sharing both your parental struggles and your professional expertise on this sensitive and important topic.
Elizabeth Callahan, BA, BCaBA and David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment